The anchors that help me withstand the waves of changes in my life
Certain people and things provide stability that I need in life with SMA
In addition to moving into my new home in February, I’ve been experiencing several other major changes. I’ve been bracing myself for them since they arrive in waves. Thankfully, several anchors in my life add stability and prevent me and the wheels of my chair from being swept away.
First I want to talk about what’s keeping me grounded in my new home. It’s comforting to know that my family feels more whole since my mom and I moved in with my sister and her family.
My brother-in-law, for instance, has gone out of his way to make me feel welcome. At least twice a day, he’ll come down to the lower level of the house, where my living space is, to see how I’m doing. He’ll ask how my day is going and if I need anything.
My mom and my nurses handle all of my SMA-related needs, and one of them is always with me. While my brother-in-law doesn’t know how to take care of me, his regular visits show me how big of a heart he has. Instead of just saying hello to me when I use my vertical platform lift to go upstairs, he’ll come down to my level of the home to greet me. He could easily decide not to do that. Not only do I appreciate it, but it also makes me feel like I belong here.
Familiarity is an anchor
Various familiar elements are also serving as anchors during this time when I’m growing accustomed to my new home.
A few months ago, while my new space was being renovated, I wrote about a worrisome change. We were told that for structural reasons, we couldn’t have a downstairs heating and air conditioning unit without making external changes to the house, which we didn’t want to do. I’d have to depend on the other units, which were upstairs.
For 30 years in our previous home, I had my own heating and air conditioning unit on my side of the house, and I was scared to be without one. Since I get cold easily, I need to be able to control the temperature of my living space. We were looking at other options when miraculously, the door we thought had closed opened again!
A couple months before I moved into the new house, the contractors figured out how to install a heating and air conditioning unit in my space. And as a bonus, no changes to the house exterior were necessary. Now I can adjust the temperature of my heating and air unit through a phone app, which provides me with a priceless sense of continuity.
My night nurse is an anchor
Another change I’ve been going through is that in January, one of my three night nurses left. She’d been working three nights a week.
Thankfully, one of my other night nurses became the anchor that kept my mom and me from being swept overboard by this change. Before January, she was working only one night a week. After her co-worker left, she picked up three additional nights. If she hadn’t done that, my mom and I would’ve been sunk. It’s extremely hard for my mom to stay up late on any night, so three nights a week would’ve been excruciating for her.
While my nights are now covered, it’s still a big change to go from three night nurses to two to cover my week. But my nursing agency is working hard to find me more. Hopefully, it’ll succeed quickly.
While living with SMA, I rely on my anchors and my faith, which help me soar and weather every storm.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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